RESEARCH ARTICLE Open Access

External support and personal agency -young persons’ reports on recovery afterfamily-based inpatient treatment foranorexia nervosa: a qualitative descriptivestudyJan-Vegard Nilsen1,2*, Trine Wiig Hage2, Øyvind Rø2,3, Inger Halvorsen2 and Hanne Weie Oddli1

Abstract

Background: Recommended treatment for adolescent anorexia nervosa (AN) is usually family-based and anoverarching treatment aim is to empower the parents to manage the difficult meals and aid their child towardrecovery. While family-based treatment prioritize collaborating with the parents, understanding the young persons’views on recovery is also important. Understanding the young person’s views and ideas is relevant as this mayfacilitate the therapeutic alliance and thus aid the therapeutic process. The purpose of the present study was toinvestigate the reflections of young persons with a lived experience of anorexia nervosa, and what factors theyconsider important for the recovery process. All participants had been provided with a family-based inpatienttreatment program, a program inspired by the core features of outpatient family-based treatment.

Methods: Participants (n = 37) presented with an extensive treatment history, including outpatient and inpatienttreatment for AN. Interview transcripts were analyzed by applying a predominantly inductive thematic approach togenerate themes across participants.

Results: The qualitative analysis generated a thematic structure entailing three levels. The superordinate theme,“Recovery is a long and winding journey: recognizing the need for support and highlighting the need for action”,captured three main themes, “Realizing you have a problem”, “Being involved in important relationships”, and“Giving treatment a real chance”.

Conclusions: Our results demonstrated that although young persons with a lived experience of anorexia nervosarecognized the importance of support from others, they placed a distinctive emphasis on self-responsibility anddetermination. We recommend clinicians working within the recommended family-based treatment frameworks becurious about young patient’s subjective perspectives of the recovery process, as connecting with their views canpotentially strengthen therapeutic relationships and facilitate change.(Continued on next page)

© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you giveappropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate ifchanges were made. The images or other third party material in this article are included in the article's Creative Commonslicence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commonslicence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtainpermission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to thedata made available in this article, unless otherwise stated in a credit line to the data.

* Correspondence: uxnilj@ous-hf.no1Department of Psychology, University of Oslo, Oslo, Norway2Regional Department for Eating Disorders, Division of Mental Health andAddiction, Oslo University Hospital, Oslo, NorwayFull list of author information is available at the end of the article

Nilsen et al. Journal of Eating Disorders (2020) 8:18 https://doi.org/10.1186/s40337-020-00293-5

(Continued from previous page)

Plain English summary: Recommended treatment for adolescent anorexia nervosa is usually family-based. Theserecommendations are supported by decades of research. In family-based treatment the overarching aim is toempower the young person’s parents to manage and take charge of the difficult situation caused by the eatingdisorder. As recommended family-based treatments usually prioritize collaborating with the parents, it is importantto be curious on the adolescents own views of what is regarded as important for the recovery process. The presentstudy offers insights into factors considered important to the recovery process by young persons with livedexperience of AN. Although voicing the importance of enlisting support from families, friends, and loved ones, theyoung participants distinctly emphasized their own responsibility, motivation and self-determination as criticalfactors for recovery. Inspired by our findings, we recommend that clinicians address the young patient’s ownpreferred ideas for recovery during treatment.

Keywords: Eating disorders, Anorexia nervosa, Recovery, Adolescent, Qualitative research, User perspectives

BackgroundRecovery from anorexia nervosa (AN) is not universallydefined in the literature [1], and quantitative researchhas demonstrated that recovery rates vary exceedinglydepending on the definition used [2, 3]. Moreover, re-covery can be approached from several positions, astreatment providers, researchers and people with a livedexperience may support different definitions. An alterna-tive to the prevailing symptom-oriented recovery em-phasis is recovery perceived from the position of peoplewith a lived experience, emphasizing personal opinionand subjective meaning making [4].Regardless of how one defines recovery from AN [5,

6], an interest in understanding what young personswith a lived experience perceive as important ingredientsin the recovery process is important. Connecting withthe patients’ own beliefs, values and preferences is con-sidered essential for the design and delivery of evidence-based practice for eating disorders [7]. Using their clin-ical expertise, clinicians working with adolescents andfamilies need to continually and wisely balance the bestavailable research evidence and the treatment prefer-ences of the patient and their family [8].Research investigating patient’s or former patient’s

perspectives on recovery has usually addressed this byasking adults or young adults to share their views [4].This research has generally demonstrated that the jour-ney toward restoring health could best be viewed as anintricate interplay between multiple factors [4, 9–11].The importance of the person’s own willpower, motiv-ation and agency on the one hand, and the significanceof meaningful and supportive relationships on the other,has been highlighted in several studies [9, 12–15]. To-gether with these individual and interpersonal features,mastering daily life in general (such as coping with edu-cation, work, and being engaged in other meaningful ac-tivities) has been underlined as a crucial requirement forrecovery [9, 12, 16]. Another recurrent theme has beenthe importance of treatment in general, and the

significance of being actively involved to achieve pro-gress [4]. In order to experience improvement, it seemsthe person has to develop ways to truly distance oneselffrom the eating disorder, both by actively taking chargeof the recovery process (i.e., striving for a different ideal),and ultimately attaining a different identity in order tobecome fully recovered [9, 10, 13, 17]. Overall, qualita-tive findings shed light on the complex interplay be-tween individual, relational and contextual factors whenthe journey toward recovery is perceived from the pa-tients’ perspectives [4, 18–21]. Research investigating pa-tient perspectives on recovery from the perspective ofthe young patient, literature is more limited [22]. In a re-view from 2015 that aimed to explore and synthesize theprocess of recovery from AN, the authors included onlyone study that involved young people (i.e., under 18) [4].Even in this qualitative study over half of the partici-pants were adults [17].When a young person is suffering from AN, a

family-based treatment approach is usually recom-mended [23]. Family therapy and family-based treat-ments have a long history in the treatment ofadolescent AN [24, 25]. One possible consequence ofemphasizing the family and parental role in obtainingrecovery is less clinician investment in working dir-ectly with the young person afflicted with the ED [20,26]. In manualized family-based treatment for AN theparental emphasis is especially clear, as the overalltherapeutic aim in the critical first phase of treatmentis to charge the parents with the responsibility for re-feeding and weight restoration. Consequently, themain therapeutic task becomes to empower the par-ents to manage this responsibility [27]. In such afamily-based framework, enhancing the young per-son’s intrinsic motivation, promoting the adolescent’sresponsibility for change, and working withadolescent-related issues, both within and outside thefamily, is usually toned down or postponed to theend of treatment [27, 28]. Although a predominantly

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 2 of 11

family-based treatment approach is frequently por-trayed in the literature as supported by promising re-search evidence [3, 29], researchers have started toquestion the evidence-base [30–32], describing itsoutcome in clinical trials as modest at best [3, 32]with some arguing that despite its promise, treatmentneeds to be augmented and better tailored to improveoutcome [33, 34].One way of augmenting the family-based treatment

approach for adolescent AN is seen in the ongoing effortof enabling an enhanced family therapeutic focus athigher levels of care [35]. Although situated in variouslocal treatment contexts, common features for these ef-forts is the overarching goal of aligning the intensifiedtreatment (i.e., day-, residential- and inpatient treatment)with the core features associated with outpatient familybased treatment [36–38]. Although such adaptationsshould be investigated further, preliminary outcome re-search show that this can be a promising way of provid-ing treatment at higher levels of care for those who failto respond to outpatient treatment [36, 37, 39].Understanding better how young persons’ with lived

experiences reflect upon important factors for recoverycan provide additional knowledge, and help ascertainwhether patient preferences and views align with therecommended treatment focus [20, 28]. Although the in-tricate relationship between the therapeutic alliance andED outcome is not clearly understood [40] we do believethat managing a balance between treatment recommen-dations and the young person’s preferences is vital, asdiscrepancies can challenge therapeutic relationshipsand enhance conflicts. There is a paucity of research in-vestigating the young person’s beliefs about what is con-sidered important for recovery. As such, the presentstudy can contribute with knowledge relevant for the on-going effort of augmenting practices to tailor treatmentto those failing to respond to the recommended first-line treatments for adolescent AN [34].Research that focuses on the perspectives of young

persons with lived experience with AN can provide im-portant knowledge about how to improve and bettertailor family-based treatment. With the present study,we aimed to investigate the perspectives of young per-sons with a lived experience of AN on factors related tothe recovery process. By being situated within a higherlevel of care setting highly influenced by a family-therapeutic treatment approach, the present study canbring forth facets of recovery from a specific treatmentcontext not included in previous research. The researchquestion was, “what do adolescents with a lived experi-ence of anorexia nervosa, who have taken part in afamily-based inpatient treatment program at a special-ized eating disorder unit, report as important factors forrecovery?”

MethodsContextThis qualitative descriptive study formed part of a largerresearch project which aimed to investigate naturalisticED outcome of family-based inpatient treatment for AN[36], treatment satisfaction [41], and the experiences offamily members following family-based inpatient treat-ment [42]. Thirty-seven (64%) of 58 former inpatients(33 females/4 males), provided written consent to takepart in this sub-study. For the sole participant under theage of 16 at follow up (i.e., age of consent), parental con-sent was also obtained.

Treatment settingDuring the family-based inpatient treatment program,up to five families were admitted at a time. The over-arching treatment focus for the majority of participantscorresponded to the first phase in outpatient FBT [27].This meant that throughout the admissions, staff em-phasized collaboration with parents, while the thera-peutic focus on the young patient was more of anindirect one. Without aiming to strictly adhere to man-ualized FBT, the guiding treatment principles during ad-missions were inspired by outpatient FBT [27, 36]. Themain therapeutic content consisted of conjoint and sepa-rated family therapy together with parental counseling,supplementary individual therapy and milieu therapywith the overarching aim of supporting parents to sup-port their child during the stay. During the inpatienttreatment program, parents were supported to managemeals and weight restoration, while staff aimed toexternalize the ED and adhere to a non-blaming andnon-etiological stance. Each young patient and familywas allocated a multidisciplinary team. The nucleus ofthis team consisted of a child- and adolescent psych-iatrist working closely with a clinical psychologist, andtwo or three nurses. Families were offered family therapysessions at least twice a week. Some patients were of-fered supportive individual therapy in addition to familytherapy. Nursing staff had daily scheduled conversationswith both parents and the young person, for preparingmeals and evaluating the ongoing process. Patients andparents took part in the weekly treatment meetings. Atdischarge, all patients and families were referred back totheir local clinic for further outpatient treatment.

Participants, recruitment and data collectionAll participants (n = 37) had been admitted for family-based inpatient treatment between 2008 and 2014 andall had a primary admission diagnosis of AN. They pre-sented with an extensive treatment history, includingboth outpatient and inpatient treatment prior to thefamily-based admission. Duration of ED prior to thefamily-based admission was on average 2.7 years (range;

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 3 of 11

0.5–6.0, SD = 1.8). Mean age at admission was 15.8 years(range; 12.4–19.5, SD = 1.8). The majority (33/37) wereadmitted voluntarily. Mean length of stay was 20.8 weeks(range; 3–58, SD = 13.5), including planned leaves fromthe ward as part of the treatment program. All familiesagreed to stay at the hospital with their child during thehospitalization. At the time of the follow up interview in2015, the majority (65%) of the total sample (n = 37) hadachieved normal body weight (i.e., estimated as achievinga BMI ≥18.5). Twenty two (59%) participants did notmeet the criteria for any DSM-5 ED-diagnosis, 8 metcriteria for AN, 2 for BN and 5 for OSFED. The meanage at the follow up interview was 20.2 years (range15.8–25.3, SD = 2.6). The mean time period from dis-charge to the follow-up interview was 4.5 years (range;1.3–7.0, SD = 1.7).Ethics approval for this study was obtained from the

Regional Committee for Medical Research ethics, SouthEast Norway [REK2014/2223]. The 37 semi-structuredinterviews were administered by a team consisting of asenior researcher, two clinical psychologists, one psych-iatrist and a psychiatric nurse. Twenty-six of the inter-views were conducted on-site at the hospital, seven atthe participant’s home, three by telephone, and one in-person elsewhere. All interviews (including telephone in-terviews) were audiotaped and transcribed verbatim by aresearch assistant and the first author. The qualitativeinterviews lasted between 30 and 100min.

Interview guideThe semi-structured interview guide was developed by agroup of experienced clinicians to address a broad rangeof post family-based inpatient treatment user experi-ences. The guide was not constructed based on a specifictheoretical model. The interview guide was structuredinto three sections, including questions covering thepre-admission phase, the admission and post-admissionphase. Most relevant for the present paper’s analysis wasthe post-admission items, and particularly the followingquestions: “Looking back on your life and the changesthat have happened related to your eating disorder –how would you describe important turning points?” and“What do you think is most important in recoveringfrom an eating disorder?”

Qualitative data analysisTo provide an overall structure for the analysis, we ap-plied a thematic analysis (TA) guiding framework [43].TA is commonly recognized as a pragmatic and flexibleframework entailing six steps to guide the researchers: 1)familiarizing yourself with the data, 2) generating initialcodes, 3) searching for themes, 4) reviewing themes, 5)defining and naming themes, and 6) producing the re-port [43]. To enable as much diversity as possible, we

decided to include all eligible patients (n = 37) in theanalysis.To manage the quite large number of transcripts, the

QSR International’s Nvivo11 Software [44] was used forboth the initial phase of sentence by sentence coding(Step 2) and in aiding the iterative process of going backand forth between the gradually developing thematicmap and checking back with the raw data in reviewingand ensuring that the evolving thematic map provided agood fit with the raw data (Steps 4 and 5).Together with the first author reading and re-reading

the complete data set several times, all authors familiar-ized themselves with reading selected parts of the datamaterial (Step 1). The first author had the overall lead ininitial coding, interpreting and moving the process oftheme development forward, toward finalizing the ana-lysis and writing up the first draft (i.e., Steps 2–6 in the-matic analysis). Although we did not adhere to a strictschedule of co-analyzing the transcripts, scientific rigorand trustworthiness [45, 46] were ensured by the re-search team doing parts of the analysis together. Thisco-constructive effort was secured by TWH reviewingand supervising the gradual steps initiated by the firstauthor, and HWO supervising the process of analyzingthe transcripts as a whole. During the analysis bothTWH and HWO performed the role as a “critical friend”[47]. Reflexivity was thus continually addressed throughfrequent dialogues and team meetings where “the twofriends” together with the first author criticallyquestioned the emerging theme development, andencouraged different interpretations from differentpositions [48, 49].Overall, the analysis was predominantly inductive

and hence not driven by a specific theoretical ap-proach. The iterative process of developing, reviewingand finally defining and naming themes (Steps 3 to 5)was informed by a combination of both a semanticand interpretative stance. Semantic in this contextmeant that we initially aimed to navigate our curiositypredominantly to the surface level [43]. As the ana-lysis proceeded, we recognized that a more interpret-ative lens was necessary to allow more nuance andrichness to the analysis. Reviewing the process, werecognized that Steps 1 to 3 were mainly influencedby a semantic level of analysis, with Steps 4 and 5 in-tegrating more interpretation. As is common in quali-tative analysis, the finalized thematic structureunderwent several major and subtle corrections beforewe finalized the thematic map which best representedand communicated the views of the participants. Toprovide readers with transparency about the distribu-tion of accounts across themes and an opportunity toevaluate robustness of findings, we added numbers tothe subthemes [50] (see Fig. 1 for details).

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 4 of 11

ResultsThe qualitative analysis generated a thematic structureentailing three levels (see Fig. 1 for details). Illustrativequotes are provided on both the main theme and sub-theme level, together with brief illustrations on thesuperordinate and main theme levels in Fig. 1. All namesprovided are pseudonyms.

Superordinate theme: recovery is a long and windingjourney: recognizing the need for support andhighlighting the need for actionThe superordinate theme represents an abstraction ofthe three main themes and their adjacent subthemes,including a) participants predominantly viewed recov-ery as a gradually evolving process which typically in-cluded episodes of progress and setbacks and b)although the majority of the participants viewed sup-port from others and their own agency as importantingredients for getting better, the latter was particu-larly emphasized. Furthermore, the superordinatetheme captured the advantages of viewing the ED asa problem, or as problematic, in order to mobilize ef-forts toward change.

Main theme 1: realizing you have a problemThis main theme captured the participants’ views onthe necessity of recognizing that the ED represents areal-life problem, and that you yourself need to fightto achieve change, as problems do not just pass withtime.

To realize or admit that I was ill, like, that Ireally had some problems, that, that I feel wasquite important. And I thought, yes, I started torealize that I had to do some things myself. Ikind of had to decide that for myself, to dosomething. That’s important [Sarah, 19]

Subtheme 1: Beware of how the ED affects your life innegative ways (N = 15)Although some of the participants noted past andpresent ambivalence toward recovery, several accentu-ated the importance of being aware of how the ED affectsrelationships negatively and obstructs desired goals andfuture dreams. Reflecting back, all but one participantreflected on a slowly evolving realization of how the EDaffects your life in negative ways.

Fig. 1 represents the thematic structure on altogether three levels: superordinate theme, capturing 3 main themes with adjacent subthemes.Numbers in parenthesis equals the number of participants sharing views within each subtheme

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 5 of 11

It’s important to realize and see more clearly thenegative influences the ED has, because it is, afterall, a way of handling difficulties or mastering life,right, so if what you get from the ED is more or bet-ter than the burden you experience, then it’s diffi-cult, to let go. But if what you get from the ED isshit, and in fact worse than the other strugglesyou’ve got, then it becomes easier. But it is difficult.It’s not easy to be attentive to the negative conse-quences the ED will have [Polly, 23]

Subtheme 2: Develop alternative ways of coping. Focus onthings that matter (N = 24)Only three participants explicitly conceptualized theED as a “coping strategy” during their interviews.However, this subtheme captured our understandingof the participants’ tendencies to conceive the ED orED-behaviors as representing different ways of cop-ing with other difficulties as low self-esteem, difficultlife experiences or relationships, or as a means ofregulating emotions. Several of the participants em-phasized the necessity of letting go of the ED or EDbehaviors in order to recover, and their reflectionssuggested that focusing on things that really mattercan aid this process.

It’s been crucial to accomplish high school, and toget a driver’s license, to start with higher education.There are new goals all the way, and it feels reallygreat to accomplish those, and, it’s this sense ofmastering, which is very important. To feel youcan live a pretty normal life, where the focus ison everything else but body and food. That’ssomething I’ve been working with, to shift thefocus [Andrea, 20]

Subtheme 3: Acknowledge that you need to do the work.Connect with your willpower and determination (N = 23)The majority of the participants were clear that theyviewed their own willpower and decision-making as ne-cessary ingredients in the recovery process. Several chal-lenged the idea of the existence of any ideal or perfectmoment for change, and rather urged fellow peers tostart to work actively for change, now.

You’re never ready for it. You’ll never wake upone morning and suddenly think; now I amready! Because, if this was how it was, it wouldhave happened. So it’s something you need to do,that’s how it is. Just start! Just start. Make a habitout of it, and, easier said than done, but really.Never wait for the perfect moment. That’s notgoing to happen. No, you will never be fullyready [Polly, 23]

Main theme 2: being involved in important relationshipsThis main theme captured views which emphasized theimportance of others. Although recognizing supportfrom parents, peers and others as important for the re-covery process, the majority of the participants made apoint that they themselves must reach out and do whatthey can to be involved in important relationships. Quitea few of the participants also emphasized the potentialof a collaborative and supportive relationship with healthcare professionals. A few shared that being in love andengaged in a romantic relationship helped shift the focustowards more important aspects of life and thus, mini-mized the influence of the ED. Even relationships withpets were seen as potentially aiding toward recovery bysome. As Joanne viewed it, relationships can be bothsupportive per se, and also represent a stepping stone to-wards accommodating other meaningful aspects of life.

Most important is to have people around, supportand help and, yes, you need to understand thatthere are better things than just thinking of food,and of course you need to want it [change] yourself,but that usually progresses out of relationships so …[Joanne, 21]

Subtheme 1: Ensure support from family members (N = 13)Many of the participants viewed support from parentsand siblings as important for getting better. Quite a fewwere clear that parental support and parental involve-ment in treatment had been very important for gettingbetter. Having family members who behaved in waysthat enhanced the feeling of being understood seemedcrucial, as the opposite could risk the likelihood of en-hancing both feelings of loneliness and opposition.Reflecting on support from family members, several ofthe participants also stressed the importance of openingup and actively welcoming the support, as opposed toavoiding or opposing family-members’ engagement andinvolvement.

The fact is that people around you want the best foryou, they want to help you and you really have tounderstand that they want to support you, and thatthey’re not your enemies that want to hurt you.That’s the EDs intention; it wants me to believe thateverybody is cruel and want to hurt me [Kate, 21]

Subtheme 2: Reconnect or get new friends. Peerrelationships matter (N = 15)Although quite a few emphasized the importance of sup-port from parents and family members during the recov-ery process, several of the participants underscored theimportance of peer relationships. Specifically, the

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 6 of 11

importance of keeping in touch with friends duringtreatment and illness was emphasized, as well as ac-tively striving to reconnect if friendships had halted.Quite a few encouraged young persons to developnew friendships if feeling alone, reminding othersthat friends do not just show up; you need to takesocial initiatives yourself.

I worked really hard to get back my friends. I re-member I had to, in the beginning. I had to invitemyself to all parties. I remember thinking this wasembarrassing and really humiliating, but still Ithought that I really had to do it, to give themthe chance to know me over again, and take meinto their lives, and that worked out really well.Now I have several friends, and I don’t need toinvite myself any longer, I’ve become a part ofthem [Brenda, 22]

Subtheme 3: Try to collaborate with your therapist.Professional relationships matter (N = 12)Although mixed experiences were voiced whenreflecting upon past therapeutic encounters, morethan a few of the participants emphasized that beingengaged in therapy and therapeutic collaborationscan be vital for change to happen. Here too, severalused the opportunity to reflect upon the importanceof becoming actively engaged in the relationshipwith the health care professionals, alluding that littleor nothing will happen if the young person remainssilent or too passive or ultimately opposes thetherapist.

I now feel that I’ve met the person I can manageto get well together with. My key worker is sosecure and I’ve managed to do a lot of importantwork and progress together with her [Anna, 18]

Main theme 3: giving treatment a real chanceThis main theme captured the participants’ views ontreatment as a potentially active ingredient for theprocess of recovery. The theme captured participants’views about the importance of actively aligning with rec-ommended treatment goals (i.e., normalizing eating be-haviors and attaining normal weight) and theimportance of working through treatment ambivalenceand resisting the temptation to opt out of treatment.Additionally, a potential domain for therapy was accen-tuated through their reflections on goal attainment (i.e.,Subtheme 2).

Dare to let go, and give treatment a chance[John, 22].

Subtheme 1: Try to connect with recommended treatmentgoals. Opt in, not out, of treatment (N = 21)

I haven’t thought much about having kids. Still, Ithink it is important to stay in treatment, becauseI want to be able to take good care of my kids,which is a huge motivation for me, actually …[Catherine, 20]

Over half of the participants emphasized the im-portance of being invested in some sort of treatment.It was as if several of the participants wanted to in-spire others struggling with EDs to give treatment areal chance. Although being involved in treatmentwas not necessarily viewed as synonymous withachieving change, more than a few participantshighlighted the significance of opting in and not outof treatment. Looking back, quite a few realized thatthey had wanted to invest even more in treatment en-counters, if they could rewind and do things over.The majority of the participants emphasized the sig-nificance, and even the necessity of, striving for nor-malizing eating behaviors for letting go of the ED,while others stressed the importance of giving normalweight a chance.

You have to give normal weight a chance. Not justdecide in advance that; “that’s not for me”, “that Idon’t dare”, “that I don’t want”. It’s all about beingbold enough to do the changes [Jane, 21]

Subtheme 2: Connect with your future self: be future andgoal-oriented (N = 17)

Ask yourself, why, ehm, why do you do this?What do you want to get out of your life? Whatare your true dreams? What is your greatestwish? [Maria, 21]

Several of the participants noted that reaching newpersonal milestones had reinforced hope, motivation andself-respect. As a consequence, they indirectly supportedthe notion of the therapeutic benefit of clarifying attain-able goals of personal significance. Several of the partici-pants felt that having a future- and goal-oriented focus,both distant and proximal, would be beneficial toemphasize in treatment and fruitful for the young personwith AN.

Try to find something in your everyday life that ispositive for you and that you really have an urge toaccomplish, and if you have a goal you really longfor, go for it, because when you accomplish it, thatjoy! [Esther, 19]

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 7 of 11

DiscussionThis study aimed to investigate what adolescents with alived experience of anorexia nervosa, who had taken partin a family-based inpatient treatment program at a spe-cialized eating disorder unit, reported as important fac-tors for recovery. As demonstrated by the superordinatetheme, “Recovery is a long and winding journey: Recog-nizing the need for support and highlighting the needfor action”, the results revealed that participants distinct-ively emphasized the importance of support from othersas well as personal responsibility. Although support fromparents, siblings, health care professionals, friends andromantic partners was valued, the centrality given totheir own motivation and self-determination was espe-cially striking in this study. A self-orientation stance wasa central finding throughout the thematic analysis, asthe main themes realizing you have a problem, being in-volved in important relationships, giving treatment a realchance all captured views contingent upon theindividual.The importance ascribed to the person’s own agent

self is an aspect embedded in recovery stories docu-mented previously in the literature [9, 13, 22]. Still, theseviews, emphasizing the young person’s own wishes (i.e.,motivation), willpower and determination, are particu-larly interesting in the present context, as our treatmentsetting offered family-based treatment of AN, which pri-oritizes the parental role in treatment and postpones theadolescent’s role in treatment. Although the treatmentoffered did not strictly adhere to manualized outpatientFBT [27], the majority of the participants had experi-enced extensive efforts to involve family in treatment, in-cluding family-based inpatient treatment [36].Family relationships are often significantly, and ad-

versely, affected when a young person develops AN, andinvolvement of the young persons’ family in treatment isrecommended by international treatment guidelines[23]. Supporting parents to support their loved one is anoverarching and integral treatment priority for family-based treatment models [24, 27, 51]. The predominantrole of parents is based upon the assumption that youngindividuals afflicted with the ED lack the ability to makerational and healthy treatment decisions due to inherentcharacteristics of the eating disorder (e.g., the ego-syntonic symptom quality, effects of malnutrition,ambivalence to change, treatment resistance). As a con-sequence, it becomes vital during treatment to prioritizethe support of the less afflicted and legally responsiblefamily members (i.e., the parents), and to provide themwith the necessary skills and confidence to make healthpromoting choices on behalf of the young person. By de-fault, the main aim of treatment is to provide sufficientsupport to ensure that parents are capable of takingcharge of the refeeding process to restore weight and

normalize eating patterns [28]. Although family-basedtreatments have a promising evidence-base [29], a largeproportion of patients and families participating in clin-ical trials fail to achieve remission [25, 30, 31]. A moremodest outcome becomes especially visible when strictremission criteria are applied [3]. Consequently, severalquestions remain on how we can optimize treatment toenable a better fit for both the young person and his andher family.One question brought forth by our findings is whether

adolescent AN treatment sufficiently enables a focus onthe young person, and whether treatment succeeds inaligning with the young person’s own preferences andvalues, a hallmark of evidence-based practice [7]. In par-ticular, it may prove relevant for individuals presentingwith a clinical picture associated with non-response toFBT [25], or for individuals with extensive and not yetefficient treatment efforts, and finally, when the patient’sage or developmental stage demand greater focus on in-dividuation and autonomy [26, 52].Qualitative research has found that adolescents value

many core aspects of family-based treatment, such as in-creased responsibility attained by parents andexternalization of the ED [20]. Still, others have foundthat some adolescents view family-based approaches asneglecting vital individual aspects valued as important[15, 18, 20]. Although the present study does not argueagainst working within a predominantly family-basedframework, it may be relevant to investigate furtherwhether there are issues valued as important from theyoung person’s position that are insufficiently addressedin recommended ED treatments [20, 53]. Rather thanchallenging a family-based approach, these findingscould be interpreted as shedding light on potential con-flicts and dilemmas clinicians may encounter in provid-ing family-based AN treatment, especially in the case ofnon-remission or relapse. The present study, in ourview, suggests the importance of endorsing an increasedadolescent-focused approach within a family-basedframework, rather than advocating for a separateadolescent-focused therapy for the adolescent.Reassuringly, the findings revealed that participants

urged peers to opt in, and not out, of treatment, and thatnormal weight is considered as essential, and even pre-requisite, for improvement. These findings align withprevious qualitative research demonstrating the central-ity of treatment for recovery [4, 18]. Findings showedthat important relationships were perceived as beneficialfor the recovery process. This is consistent with boththeory and clinical observations illustrating that familydynamics are afflicted when a young person developsAN, and is in line with recommendations to involve theentire family in treatment [24, 54]. However, results alsodemonstrated that friends and romantic relationships,

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 8 of 11

even pets, are viewed as important factors in recovery.This implies that clinicians and treatment providersshould offer treatments that are attentive towards theyoung person’s wider social context, which concurs withprior studies [53, 55–57].Rather than pinpointing specific turning points, the

majority of participants in this study reflected that re-covery was an emerging and gradual process to over-come their eating disorder. Few shared explicitexamples on discrete turning points, which could alsobe due to study design or the relatively young age ofthe sample. Personal narratives on turning points maycontinue to evolve and become construed as personsbecome older [9].Overall, research investigating adolescents’ “insider

perspectives” on what is viewed as personally importantfor recovering from an ED is essential, as treatment out-come for this population is considered modest at best[6]. Consequently, many unanswered questions remainto be answered regarding how we can more efficientlyprovide and personalize treatment for adolescents need-ing specialized care for AN [58].

Strengths and limitationsInvestigating young persons’ views about factors import-ant for recovery is an understudied area. This issue isworth investigating as it is important to understandwhether young patients’ preferred ideas and views alignswith recommended family-based treatments focusing onparental responsibility. An important limitation is relatedto the interview guide and data collection. The semi-structured interview covered a wide range of questionsassessing participants’ treatment experiences and wasnot developed with the sole aim of investigating thecurrent study’s research question (i.e., young persons’beliefs about important factors for recovery). More in-depth and nuanced reflections might have been obtainedif the interview guide and interview process had beendesigned specifically for the sole purpose of this study.Four of the interviewers who collected data were previ-ously employed at the treatment unit. As such, inter-viewees might have minimized disclosure of relevantinformation due to concerns of disappointing the inter-viewer. On the other hand, familiarity with the inter-viewer could also be viewed as strength, as participantsmight have felt at ease in disclosing sensitive informa-tion. Participants were not asked to provide feedback ontranscripts or preliminary findings, which could havealso provided greater depth and enhanced validity of theresults.

ConclusionsThis study offers valuable insights into factors consid-ered important to the recovery process by young persons

with lived experience of AN. Although voicing the im-portance of enlisting support from families, friends, andloved ones, participants distinctly emphasized their ownresponsibility, motivation and self-determination as crit-ical factors for recovery. The view that external supportis important aligns with the predominant relationalstance embedded in a family-based treatment approachfor AN. Whereas the self-orientation stance (i.e., the im-portance the participants place on their own agency),suggests that increased therapeutic focus is needed to fa-cilitate the young person’s own motivation and agencywhile working within a family-based framework, aframework that typically emphasizes fostering parentalagency. Inspired by our findings, we recommend that cli-nicians address the young patient’s own preferred ideasfor recovery during treatment. This stance aligns with anevidence-based practice framework and is oriented to-ward the young person’s own ideas and preferences,which may help foster treatment engagement and ultim-ately aid change.

AbbreviationsAN: Anorexia nervosa; FBT: Family-based treatment; TA: Thematic analysis

AcknowledgementsThe authors would like to thank the participants for their greatly appreciatedcontributions. The authors are thankful for the English proofreadingperformed by PhD Deborah Lynn Reas. We acknowledge Selma Øverland Liefor taking part in transcribing interviews and express our thanks to TorhildTorjussen Hovdal, Hedvig Aasen and Anne Lise Kvakland for theircontributions in conducting 4 of the interviews.

Availability of data materialsThe dataset collected and analyzed during the current study are not publiclyavailable as this could compromise participant privacy. The correspondingauthor can be contacted on reasonable request with questions consideringthe dataset.

Authors’ contributionsTogether with JVN, IH made a substantial contribution to developing theinterview guide. IH was supervising the data collection and all authorsfamiliarized themselves with the data set by reading complete transcribedinterviews. JVN transcribed the majority of the transcripts, proofread thewhole data set and read and re-read the whole data set several times. Theprocess of developing the theme structure and analyzing and interpretingthe data material was a collaborative effort between JVN and TWH andHWO. JVN wrote the first draft of the manuscript. HWO supervised the wholeprocess together with ØR and TWH, and all authors made contributions tothe final paper. All listed authors are accountable for all aspects of the work,including issues related to accuracy and integrity. All authors read and ap-proved the final version of the manuscript.

FundingThe research reported in this paper was supported by the RegionalDepartment for Eating Disorders, Oslo University Hospital, Norway.

Ethics approval and consent to participateEthics approval was granted by the Regional Committee for MedicalResearch ethics, South East Norway [REK2014/2223]. All participants gavetheir written consent to participate.

Consent for publicationNot applicable.

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 9 of 11

Competing interestsThe authors declare that they have no competing interests.

Author details1Department of Psychology, University of Oslo, Oslo, Norway. 2RegionalDepartment for Eating Disorders, Division of Mental Health and Addiction,Oslo University Hospital, Oslo, Norway. 3Institute of Clinical Medicine,University of Oslo, Oslo, Norway.

Received: 28 November 2019 Accepted: 31 March 2020

References1. Bardone-Cone AM, Hunt RA, Watson HJ. An overview of conceptualizations

of eating disorder recovery, recent findings, and future directions. CurrPsychiatry Rep. 2018;20(9):79.

2. Couturier J, Lock J. What is recovery in adolescent anorexia nervosa? Int JEat Disord. 2006;39(7):550–5.

3. Le Grange D, Huryk KM, Murray SB, Hughes EK, Sawyer SM, Loeb KL.Variability in remission in family therapy for anorexia nervosa.Int J EatDisord. 2019. p. 1–8. https://doi.org/10.1002/eat.23138.

4. Duncan TK, Sebar B, Lee J. Reclamation of power and self: a meta-synthesisexploring the process of recovery from anorexia nervosa. Adv Eat Disord.2015;3(2):177–90.

5. Dawson L, Rhodes P, Touyz S. Defining recovery from anorexia nervosa: aDelphi study to determine expert practitioners’ views. Adv Eat Disord. 2015;3(2):165–76.

6. Khalsa SS, Portnoff LC, McCurdy-McKinnon D, Feusner JD. What happensafter treatment? A systematic review of relapse, remission, and recovery inanorexia nervosa. J Eat Disord. 2017;5:20.

7. Peterson CB, Becker CB, Treasure J, Shafran R, Bryant-Waugh R. The three-legged stool of evidence-based practice in eating disorder treatment:research, clinical, and patient perspectives. BMC Med. 2016;14:69.

8. Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidencebased medicine: what it is and what it isn't. BMJ. 1996;312(7023):71–2.

9. Nilsson K, Hagglof B. Patient perspectives of recovery in adolescent onsetanorexia nervosa. Eat Disord. 2006;14(4):305–11.

10. Conti JE. Recovering identity from anorexia nervosa: Women's constructionsof their experiences of recovery from anorexia nervosa over 10 years. JConstr Psychol. 2018;31(1):72–94.

11. Fogarty S, Ramjan LM. Factors impacting treatment and recovery inAnorexia Nervosa: qualitative findings from an online questionnaire. J EatDisord. 2016;4:18.

12. Hsu LKG, Crisp AH, Callender JS. Recovery in anorexia nervosa—thepatient's perspective. Int J Eat Disord. 1992;11(4):341–50.

13. Keski-Rahkonen A, Tozzi F. The process of recovery in eating disordersufferers' own words: an Internet-based study. Int J Eat Disord. 2005;37(Suppl):S80–6 discussion S7–9.

14. Tozzi F, Sullivan PF, Fear JL, McKenzie J, Bulik CM. Causes and recovery inanorexia nervosa: the patient's perspective. Int J Eat Disord.2003;33(2):143–54.

15. Federici A, Kaplan AS. The patient's account of relapse and recovery inanorexia nervosa: a qualitative study. Eur Eat Disord Rev : J Eat Disord Assoc.2008;16(1):1–10.

16. Button EJ, Warren RL. Living with anorexia nervosa: the experience of a cohortof sufferers from anorexia nervosa 7.5 years after initial presentation to aspecialized eating disorders service. Eur Eat Disorders Rev. 2001;9(2):74–96.

17. Weaver K, Wuest J, Ciliska D. Understanding Women’s journey of recoveringfrom anorexia nervosa. Qual Health Res. 2005;15(2):188–206.

18. Bezance J, Holliday J. Adolescents with anorexia nervosa have their say: areview of qualitative studies on treatment and recovery from anorexianervosa. Eur Eat Disord Rev : J Eat Disord Assoc. 2013;21(5):352–60.

19. Westwood LM, Kendal SE. Adolescent client views towards the treatment ofanorexia nervosa: a review of the literature. J Psychiatr Ment Health Nurs.2012;19(6):500–8.

20. Medway M, Rhodes P. Young people’s experience of family therapy foranorexia nervosa: a qualitative meta-synthesis. Adv Eat Disord. 2016;4(2):189–207.

21. Bohrer BK, Foye U, Jewell T. Recovery as a process: Exploring definitions ofrecovery in the context of eating-disorder-related social media forums. Int JEat Disord. 2020. p. 1–5. https://doi.org/10.1002/eat.23218.

22. Zaitsoff S, Pullmer R, Menna R, Geller J. A qualitative analysis of aspects oftreatment that adolescents with anorexia identify as helpful. Psychiatry Res.2016;238:251–6.

23. Hilbert A, Hoek H, Schmidt R. Evidence-based clinical guidelines for eatingdisorders: international comparison. Curr Opin Psychiatr. 2017:30:423–37.

24. Eisler I, Wallis A, Dodge E. What's new is old and what's old is new: Theorigins and evolution of eating disorders family therapy. In: Loeb DLG KL,Lock JD, editors. Family Therapy for Adolescent Eating and WeightDisorders: New Applications. New York: Routledge; 2015. p. 6–42.

25. Lock J, Le Grange D. Family-based treatment: where are we and whereshould we be going to improve recovery in child and adolescent eatingdisorders. Int J Eat Disord. 2019;52(4):481–7.

26. Dimitropoulos G, Freeman VE, Allemang B, Couturier J, McVey G, Lock J,et al. Family-based treatment with transition age youth with anorexianervosa: a qualitative summary of application in clinical practice. J EatDisord. 2015;3(1):1.

27. Lock J, Le Grange D. In: Le Grange D, Russell G, editors. Treatment manualfor anorexia nervosa : a family-based approach. 2nd ed. New York: GuilfordPress; 2013.

28. Rienecke RD. Family-based treatment of eating disorders in adolescents:current insights. Adolesc Health Med Ther. 2017;8:69–79.

29. Lock J. An Update on Evidence-Based Psychosocial Treatments for EatingDisorders in Children and Adolescents. J Clin Child Adolesc Psychol : Official JSoc Clin Child Adolesc Psychol, Am Psychol Assoc, Div 53. 2015;44(5):707–21.

30. Strober M. Proposition: family based treatment is overvalued position:proposer. Adv Eat Disord. 2014;2(3):264–84.

31. Conti J, Calder J, Cibralic S, Rhodes P, Meade T, Hewson D. ‘Somebody Else'sroadmap’: lived experience of Maudsley and family-based therapy foradolescent anorexia nervosa. Aust N Z J Fam Ther. 2017;38(3):405–29.

32. Murray SB, Compte EJ, Quintana DS, Mitchison D, Griffiths S, Nagata JM.Registration, reporting, and replication in clinical trials: The case of anorexianervosa. 2019;0(0).

33. Murray SB. Updates in the treatment of eating disorders in 2018: a year inreview in eating disorders: the journal of Treatment & Prevention. EatDisord. 2019;27(1):6–17.

34. Richards IL, Subar A, Touyz S, Rhodes P. Augmentative Approaches inFamily-Based Treatment for Adolescents with Restrictive Eating Disorders: ASystematic Review. European Eating Disorders Review. 2017:n/a-n/a.

35. Murray SB, Anderson LK, Rockwell R, Griffiths S, Le Grange D, Kaye WH.Adapting family-based treatment for adolescent anorexia nervosa acrosshigher levels of patient care. Eat Disord. 2015;23(4):302–14.

36. Halvorsen I, Reas DL, Nilsen JV, Ro O. Naturalistic outcome of family-basedinpatient treatment for adolescents with anorexia nervosa. Eur Eat DisordRev : J Eat Disord Assoc. 2017;26(2):141–5.

37. Spettigue W, Norris ML, Douziech I, Henderson K, Buchholz A, Valois DD,et al. Feasibility of implementing a family-based inpatient program foradolescents with anorexia nervosa: a retrospective cohort study. FrontPsychiatry. 2019;10:887.

38. Hoste RR. Incorporating family-based therapy principles into a partialhospitalization programme for adolescents with anorexia nervosa:challenges and considerations. J Fam Ther. 2015;37(1):41–60.

39. Rienecke RD, Richmond RL. Three-month follow-up in a family-based partialhospitalization program. Eat Disord. 2018;26(3):278–89.

40. Graves TA, Tabri N, Thompson-Brenner H, Franko DL, Eddy KT, Bourion-Bedes S,et al. A meta-analysis of the relation between therapeutic alliance andtreatment outcome in eating disorders. Intl J Eat Disord. 2017;50(4):323–40.

41. Halvorsen I, Ro O. User satisfaction with family-based inpatient treatment foradolescent anorexia nervosa: retrospective views of patients and parents. JEat Disord. 2019;7:12.

42. Nilsen J-V, Hage TW, Rø Ø, Halvorsen I, Oddli HW. Family-based inpatienttreatment for adolescent anorexia nervosa: a thematic analysis of formerpatients’ post-treatment reflections. Eat Disord. 2019:1–18.

43. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol.2006;3(2):77–101.

44. NVIVO-11. NVivo qualitative data analysis Software; QSR International PtyLtd. Version 11, 2015.

45. Morse JM. Critical analysis of strategies for determining rigor in qualitativeinquiry. Qual Health Res. 2015;25(9):1212–22.

46. Elliott R, Fischer CT, Rennie DL. Evolving guidelines for publication ofqualitative research studies in psychology and related fields. Br J ClinPsychol. 1999;38(3):215–29.

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 10 of 11

47. Smith B, Sparkes AC. Narrative inquiry in psychology: exploring the tensionswithin. Qual Res Psychol. 2006;3(3):169–92.

48. Smith B, McGannon KR. Developing rigor in qualitative research: problemsand opportunities within sport and exercise psychology. Int Rev Sport ExercPsychol. 2018;11(1):101–21.

49. Berger R. Now I see it, now I don’t: researcher’s position and reflexivity inqualitative research. Qual Res. 2015;15(2):219–34.

50. Maxwell JA. Using numbers in qualitative research. Qual Inq.2010;16(6):475–82.

51. Murray S, Anderson L, Cohn L. Innovations in family therapy for eatingdisorders : novel treatment developments, patient insights, and the role ofcarers: Routledge; 2017.

52. Dimitropoulos G, Landers AL, Freeman V, Novick J, Garber A, Le Grange D.Open trial of family-based treatment of anorexia nervosa for transition ageyouth. J Can Acad Child Adolesc Psychiatry. 2018;27(1):50–61.

53. Lindstedt K, Neander K, Kjellin L, Gustafsson SA. A life put on hold:adolescents' experiences of having an eating disorder in relation to socialcontexts outside the family. J Multidiscip Healthc. 2018;11:425–37.

54. Whitney J, Eisler I. Theoretical and empirical models around caring forsomeone with an eating disorder: the reorganization of family life and inter-personal maintenance factors. J Ment Health. 2005;14(6):575–85.

55. Patel K, Tchanturia K, Harrison A. An Exploration of Social Functioning inYoung People with Eating Disorders: A Qualitative Study. PloS One. 2016;11(7):e0159910–e.

56. Linville D, Brown T, Sturm K, McDougal T. Eating disorders and socialsupport: perspectives of recovered individuals. Eat Disord. 2012;20(3):216–31.

57. Westwood H, Lawrence V, Fleming C, Tchanturia K. Exploration of friendshipexperiences, before and after illness onset in females with anorexia nervosa:a qualitative study. PLoS One. 2016;11(9):e0163528.

58. van Furth EF, van der Meer A, Cowan K. Top 10 research priorities for eatingdisorders. Lancet Psychiatry. 2016;3(8):706–7.

Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.

Nilsen et al. Journal of Eating Disorders (2020) 8:18 Page 11 of 11